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Tuesday, 21 March 2017

Brain and bones

About 6 months before I was diagnosed with cancer, I randomly predicted I would live until I was 35 years old. I was being pessimistic because my mom had not long died from breast cancer, and I was going through genetic testing to see if I had a gene fault that put me at high risk of breast cancer myself. That particular test didn't find anything but I still had a feeling of doom that I couldn't shake off. Fast forward a few months and I'm diagnosed with breast cancer, at age 33.... and that random prediction that I would die at 35 has been lurking in the back of my mind ever since. Well, the good news is that yesterday was my birthday and I'm still here, 36 years and a day old. Woohoo.The not-so-good-(but-hopefully-it-turns-out-to-all-be-nothing)-news is that I haven't been all that well recently and am not feeling entirely confident about making it to 37. The hysterectomy and BSO (bilateral salpingo oopherectomy aka ovaries out) last November has been taking it's toll. The first 3 months were as expected - sore and tired and fairly immobile, but signed off from work, and geared up from day 1 to spend a lot of time on the sofa watching box sets. Then I started to return to work, and to normal life (albeit on a 'phased return'). By this time the menopause is kicking in. One of the first things was insomnia although the not being able to sleep for no reason has improved recently. However, the hot flushes have been consistently intense with no sign of letting up. I probably get a few every hour. Some are accompanied by suddenly breaking out into a massive sweat. This is most likely to happen when I am in public, or in the middle of a conversation with someone who doesn't know me, or during the night. Plenty of hours sleep lost to waking up sweating like a pig for no apparent reason. But this is all no big deal in the grand scheme of things. I knew what to expect with them as I had them after chemo, and at home and work I have desk fans and chillow pillows that come to the rescue. Next I started getting heart palpitations. This mostly happens at night, about half an hour after I have gone to bed, and can last for up to an hour and a half. Heart racing and fluttering, as if I'm really anxious about something or about to have some sort of panic attack. I'm not anxious, but that's how it feels physically, and it's another thing that stops me sleeping because sleeping really isn't possible when your heart's racing like that.Then came the bone pain. This is something else I was already used to feeling to an extent because of Tamoxifen - the drug I have been taking since I finished radiotherapy. It blocks estrogen receptors throughout your body and one of the common side effects is bone pain / joint pain. On a good day I would just feel it in my ankles in the night and in the morning. On a bad day it would be all joints, right down to the little ones like knuckles. But while it was a bit of a pain in the arse, it was always manageable. Recently though the pain has been building up, and lasting all day. I am also now getting pain even when I'm sitting or lying down. There are times I have struggled to walk from my bedroom to the bathroom, or struggled to walk down the stairs at work. I keep finding myself holding on to walls or handrails and pulling myself along with my arms. I imagined this is what it's like to be 80 years old and riddled with arthritis. I just thought all this is the menopause and it's tough shit. I can't have HRT because of the cancer, and so I just have to suck it up and get on with it.But then my head started getting weird. It's very difficult to explain. It's not headaches (although I've had a few headaches too), and I'm not in pain or needing painkillers because of it. It is often like pressure, as if something is pressing on part of my head (there are 4 or 5 specific parts of my head where this happens). Sometimes it is like the area goes a bit numb. Sometimes there might be a bit of tingling or buzzing, and a few times it has felt like there are bubbles in there. Sometimes it feels like I have been whacked on the head with a frying pan, but without any of the pain. Sometimes it goes in to my face or my ear. All weird feelings that I have never had before. It started occasionally and now it is every day, sometimes for most of the day. It's not painful but it's entirely distracting and unnerving.Having put it off for as long as I could, I went and saw my GP last week. The encouraging bit is I answered 'no' to most of the things that are the most common symptoms of cancer in your brain, and my GP thought it could just be menopause related. She was shocked that I have not been given any information or support post-surgery regarding menopause and said that while I can't have HRT, there are other drugs that can help ease menopause symptoms. But, even so, having had cancer, when anything like this crops up, you have to be checked for cancer. So she has written to my oncologist to refer me back to them, for a brain scan to check for cancer in my brain. This is why I was putting off going to the doctor - as soon as you tell them you have weird things going on in your head, they will probably send you for a brain scan. It doesn't matter how many times you tell yourself, or someone else tells you, it's probably menopause or nothing, the reality is, if you are having a brain scan then you might be told there is cancer in your brain, and cancer in your brain means Game Over. There is no cure if the cancer has spread to your brain. You now have incurable cancer and will die - it's just a matter of how many months left. So hopefully anyone can understand why I don't want a brain scan. My doctor also has asked my oncologist to review and advise on my menopausal symptoms and what they might be able to give me to ease them.Also at this appointment the doctor did a blood test, and I got the results 2 days later. There's two things going on. First of all I have a low white blood cell count. This sent me in to a massive spin of doom and gloom because the last time I'm aware that I had an inexplicable issue with my white blood cells was before I was diagnosed with cancer and it was the cancer causing the low white blood count, I just didn't know that at the time. I started adding two and two together. Weird head sensations + low white blood count = cancer in my brain. Then on Saturday morning I woke up with a sore throat which has turned into a cold. I briefly felt relieved as I assumed that the low white blood count was caused by this cold and I just hadn't yet got symptoms at the time of the blood test. But then I realised, it could be the other way round - I got a cold because of my low white blood count and weakened immune system. I was in Blackpool for the weekend and even though it was extremely windy and rainy I made Ricky walk for about a mile along the beach because I wasn't sure if it would be the last time I ever get to see the sea or walk on the sand. Now I don't know what to think. I guess I have to wait for the next blood test and see if anything has improved or not.And then the second issue with my blood was a severe vitamin D deficiency. I didn't know anything about this but I clocked it wasn't good by the way my GP was talking about it! She prescribed me vitamin D tablets to start taking that day, for at least 2 months, and I am to go back in for more blood tests to check things improve. I have since read about vitamin D deficiency and realised a few things. First of all there's a good chance it is what is actually causing a lot of what I thought was menopause symptoms, in particular the ridiculous joint pain, the heart palpitations and the extreme tiredness. (In Blackpool, I was having to go for naps in the day. Now that aint normal....). Also I have had other things going on which it turns out are caused by vitamin D deficiency including cramps and muscle weakness. (It also can cause weight gain but I am not sure if I can blame it for my recent weight gain or if that is more to do with all the eating and drinking haha). The other thing I learned is that Vitamin D is a key part of your body's defence against breast cancer. So now I am shitting myself that if there is anything wrong with me relating to cancer, that the vitamin D deficiency might have caused it or accelerated it. And the other thing is, why the hell does no one tell you to take Vitamin D?! Especially if you have had or are at risk of having breast cancer?! It should be on big signs everywhere: TAKE VITAMIN D EVERY DAY FFS!! But anyway, I'm now on super-duper 3million x the recommended daily allowance of vitamin D tablets and hopefully in a few weeks a lot of things will have improved. Maybe it is even the lack of vitamin D that is making my head bubble and buzz. I need a break from all this shit because I have now spent way too long being tired and ill. Today is my day off work and I went in to town to get a new residents parking permit card. It has always been the process that you have to go in to the council, in person, with ID. I turned up and got told they just changed it and you can only get them by applying online and as it happened they got rid of all the parking permits in the office just yesterday. My chin started to wobble and my eyes welled up and it took everything in me to not burst in to full on ugly tears, I was just so tired and my knees hurt so much and I couldn't believe I'd gone all that way for nothing. I then hobbled to the bus stop because I knew I wouldn't be able to walk home. (20 min walk). THIS IS RIDICULOUS. I am 36 years and 1 day old.Right now I honestly don't know if this is all vitamin D deficiency, and in a few weeks I will be back to normal. Or if it is menopause, and I need drugs to help and/or I just need to deal with it for the next year or two til it eases off. Or if this is my body shutting down because cancer has spread and everything is going to shit internally. I am sorry for such a long and whiny post and I wouldn't blame anyone for not bothering to read it but just in case anyone did make it to the end. Thanks for reading, sorry for such a miserable moan, but I actually do feel a bit better for getting all that out. Oh and PS - I just want to say thank you for all the lovely birthday messages, and I did have a lovely weekend despite everything. Ricky is amazing and it did me the world of good to see the sea and eat lovely food, and for most of the time, forget about the potential cancer in my brain.

5 comments:

Sarah you poor love! What a nightmare. You are not alone in assuming every ache & pain might be TROUBLE. Like you I am sick to death (unfortunate phrase) of being ill. I'm 2 years on from diagnosis, 6 months out of treatment & everything aches. It's profoundly depressing. Today I have developed shingles....BLOODY marvellous! Anyway, at least we don't have something worse. Chin up Chuck. I still live in hope of getting back to normal at some point. I have found Nutrition FX Menopause 3 good for flushes & bone pain, it's made out of mung beans, green tea etc, so no downside of taking it, apart from the cost ha ha. I read most people with BC have vit D deficiency, don't know why. Take care & put on a comedy DVD/film. Good luck for your scan. xx

Hi! I love your blog! I am currently beginning a project in which I compile the stories of female cancer patients and educate the students of my high school about the more personal aspects of cancer. This is for my Girl Scout Gold Award project. I’d really like to go into further detail over email. Could you email me and let me know if you would like to be a part of this? Thank you so much for having such an amazing and inspiring blog. (ella13burch@gmail.com)

Hi, I still refer back to your post with the beautiful Expansion sculpture and I thought I'd check in and see how you are today. You write so eloquently and courageously, and with such dark humour. I appreciate it! Sarah

Hi, I still refer back to your post with the beautiful Expansion sculpture and I thought I'd check in and see how you are today. You write so eloquently and courageously, and with such dark humour. I appreciate it! Sarah